For anyone who has been in a residence or hospital in the province of Quebec in the last week, may have noticed the User Committee or Patient Committee posters. I know, the name User Committee sure does not sound so good. Don’t blame the committees; it is the name given to them by the system. I guess who ever came up with it did not understand the negative connotation the word USER has in English
Maybe, like me, you wondered what they do. It took me a while to figure it out even after I was accidentally on one for three years. I am saddened that I did not understand what was out there to support us when we were trying to negotiate my husbands medical condition. Though these committees exist to help you speak up if you have a complaint, where do you go to help you navigate the new path you are on?
In part, you are back on the path to the User Committee or the Residents Committee. Usually the people who volunteer on these types of committee are there because they are in the same boat as you. They are there to defend your rights as a patient or user of the medical services. They may be able to direct you to the services you need or show you how to be heard.
I just wish the Resident Committee or User Committee was easier to find.
The second source could be if there is a social worker in the mix. The first time I had contact with a social worker for my husband’s case was almost five months after his sixth brain surgery. I believe there are resources available though I was never made privy of them.
My greatest resource during our ride was the people I would meet at the hospital. It is true I happen to be almost outgoing and have a fairly open inviting face. The reality is the first two brain surgeries had my husband at the hospital for seven weeks each time. This gave me an opportunity to meet many people and listen to their stories. All subsequent hospital stays were for much shorter and we were left to fend for ourselves at home.
If you can not find the services closer to your situation I wanted to share with you people are trying their utmost to have the voices of the patient or the person losing their autonomy heard. In Québec there is the RPCU (Regroupement Provincial des Comités d’Usagers) You may be able to find other resource through them.
We are also blessed with the internet. Through this new path, the possibilities are almost overwhelming. It is possible to look for forums or blogs dealing with the illness or how to manage living with the new conditions. Sometimes we need just be reminded that it is possible.
I invite everyone to sharing this blog in case it is a good fit for someone starting their own path.